Transitions to Adult Care

A health care transition is the planned movement of adolescents and young adults from a child-centered to an adult-oriented health care system.  The goals of the transition for children with chronic physical and medical conditions, and for their families, is to improve their ability to manage their own health care, advocate for themselves, and effectively use health services. It is important to remember that this is a process, not a one-time event.

For providers, the goal is to ensure an organized clinical process in both pediatric and adult care settings to facilitate preparation for the transition and then smooth transfer of care to integrate patients into the adult care system.

In the past few decades, thanks to improvements in technology; the development of newer, more effective treatments; and the delivery of higher quality, more personalized care, medically complex patients have survived illnesses that were thought to be lethal just a few years ago. Many children with special health care needs, including those with neurodevelopmental and intellectual disabilities, are living long into adulthood. This has created a new challenge for health care providers. Who takes care of young adults with special health care needs? How do we best address the specific health care needs of patients who are making the transition to adulthood? What problems arise when transition goes wrong?

Every health care system (and every health care provider, for that matter) handles the situation differently. Some providers, systems, and insurers require that pediatric patients make the transition to an adult system at age 18. Others are more flexible and will see patients into young adulthood.

Patients and families themselves may be unprepared for the differences in the approach to care between pediatric and adult health care providers and systems. Pediatric systems tend to be more family-centered and may be more interdisciplinary in nature. Conversely, adult health systems are patient-centered, rely upon patient autonomy, and may use a less interdisciplinary approach. These issues can lead to trouble for patients with complex needs.

Inadequate, unplanned, or incomplete transitions are associated with morbidity and gaps in care. Patients and families may not know how to find appropriate adult providers. Providers of adult care themselves may feel unprepared to take on patients with certain conditions, especially for those with rare neurological, metabolic, or genetic disorders; certain neurodevelopmental conditions; complex neurobehavioral disorders; or intellectual disability.

Patients who are unable to find providers of adult care may be lost to follow-up for years. They may only seek care in times of crisis or turn to emergency and urgent care services as a result. Ultimately, this can lead to emotional distress, dissatisfaction with care, and higher health care costs for patients, as well as increased health service utilization.